New report reveals urgent need for NHS reprioritisation of CSU - a distressing and disfiguring form of chronic hives
A new report published June 13, 2014 sets out six key challenges faced by those living with chronic spontaneous urticaria (CSU) and those responsible for its diagnosis and management. The Wheals of Despair report - created by a multidisciplinary group including hospital specialist consultants, primary care professionals and Allergy UK, initiated and funded by Novartis Pharmaceuticals Ltd - encourages the urgent re-evaluation of the current approach to CSU and highlights the importance of its prioritisation in the minds of healthcare professionals and the NHS.
The report is underpinned by the first ever audit of people with CSU, carried out by Allergy UK and led and funded by Novartis Pharmaceuticals UK Limited. The audit found more than half of people with CSU report that they do not have control over their symptoms and state that their current treatment is not sufficient to manage their condition[ii]. Furthermore, over 50% of those with CSU wait more than twelve months for a referral to see a specialist for a diagnosis[ii], adding to the anxiety caused by the discomfort of their symptoms.
Contributors to the report identify gaps in the current healthcare system which are thought to add to the delay in diagnosis of CSU and trap patients in a cycle of inadequate treatment. A key conclusion of the report is that despite new treatment options recently becoming available for approximately 40% of CSU patients who are unresponsive to H1 antihistamine therapy - previously the only licensed treatment for CSU - healthcare professionals and those affected remain unaware of what treatments are appropriate and available to them[ii].
Dr Sinisa Savic, Consultant Clinical Immunologist, St James's University Hospital, Leeds: "As healthcare professionals the goal of the treatment we recommend is always to try to completely eradicate all symptoms troubling our patients. We know that over half of those with CSU do not find any relief even with up to four times the licensed doses of antihistamines. With over 50% of those participating in this survey reporting that their current treatment is not sufficiently managing their condition, we owe it to our patients to explore new therapies, to find an option that works for those who continue to be affected by their symptoms."
In addition to delays in referral and correct diagnosis, lack of national guidance or prioritisation was also identified as a key challenge faced by those living with CSU and clinicians alike[ii]. As such, the report calls for the introduction of national guidance and development of dedicated regional CSU patient pathways to expedite the diagnosis and treatment of CSU2. Furthermore, the report highlights the important role that GPs with special interest in allergy can play in helping manage these patients[ii].
Dr Nuala Lynch, GP with a special interest (GPwSI) in allergy, Frimley Park Hospital NHS Foundation Trust: "GPwSIs in allergy have a valuable role to play in helping identify and manage patients living with CSU and speed up the referral system for patients that need it. We need to raise GP awareness of CSU and highlight the importance of early detection and appropriate treatment in helping to reduce the emotional distress we've seen in this patient audit."
Urticaria is one of most common reasons people seek the advice of GPs, paediatricians, dermatologists, allergists and emergency medical care[iii]. Despite having no associated mortality, CSU affects patients' quality of life significantly. The dermatology life quality index (DLQI) scoring system shows CSU to have a greater impact on health-related quality of life than other more commonly known chronic dermatological conditions, such as Hansen's disease or alopecia[iv]. One study even suggested that the negative impact of CSU upon a person's life is similar to that seen in coronary artery disease, with patients feeling a similar lack of energy, social isolation and emotional upset[v].
In addition to highlighting strong links to anxiety and social isolation, key findings showed 90% of those surveyed say their sleep is regularly disrupted by the condition[ii], potentially decreasing productivity while at work and nearly a quarter of people living with CSU are forced to miss work at least once a month as a direct result of their symptoms2. Nine out of ten people with the condition report being so significantly affected that they are restricted in fundamental daily activities, such as going to work and sexual relations[ii].
Maureen Jenkins, Director of Clinical Service, Allergy UK: "These new data provide further evidence that the unpredictable nature of CSU has a strong emotional and psychological impact and is associated with a more substantial negative effect on quality of life than other skin diseases. Couple this with the cosmetic disfigurement and embarrassment sometimes caused by CSU and you can see why many patients suffer from anxiety and depression."
Vital statistics: key findings from the Wheals of Despair CSU patient audit[ii]
- Nearly a quarter miss work at least once a month due to their symptoms
- More than half (56%) say that they do not have control over their symptoms
- 9 out of 10 say that their sleep is affected by CSU
- Nearly half (46%) feel like crying at least once a week due to their CSU symptoms
- 48% are unable to take part in usual social activities, with 37% reporting that their sex life is restricted
- Nearly all (90%) say that their CSU symptoms place limitations on their normal physical activity such as sports, hobbies, work and sex
- Over 50% of sufferers have waited over 12 months for a referral to see a specialist
- Over half of sufferers state that their current treatment was not sufficient to manage their symptoms
- 86% of sufferers feel frustrated by their symptoms at least once a week
- 40% of women feel like crying every week because of their CSU symptoms